Sunday, November 25, 2012

Trying as ever to get her to eat, we tried some rice rusks that Brother eats, she likes them!

Happy to be playing with sister!

Speech eval – she played pretend! When asked to put the bear to sleep, she put a wash cloth on it. When asked to give the bear a drink, she put the cup to its mouth! Wahoo. Six months ago she looked at us like “you must be kidding me.” But this time, she did it. Progress, it’s all about progress over here!

Thanksgiving at Grandma’s - playing with cousins on the trampoline.

Gotcha!

Bella and her interesting way to use headphones :) A wonderful view of her crazy leg and why I’ve pretty much given up that she’ll ever walk normally. Human legs aren’t meant to turn that way.

Cuddling with sister early on a Sunday morning.

Tuesday we spent all day going, being, and coming home from downtown for our endocrine appointment. I pulled the “since we have been decannulated” card out and asked if we could please find a doctor closer to home. And she agreed! Hallelujah. So excited to be moving away from the medical center! Slowly, but surely.

Sunday, November 18, 2012

Bella is doing so well. I am so proud of her. She is doing well in her therapies.

She is having so much fun with her siblings.

She got croup and handled it just like the rest of us. Her o2 got a little low (88), but she is pulling through.

She is doing so well that I changed her primary doctor. No longer do we have to go down to the hospital for every little thing. No, she sees the same pediatrician as her brother. I am so happy!

Bella got her four year old shots and her flu shot. She reacted just like she always does.

We went in for labs and our sweet phlebotomist about cried. She couldn’t believe we were there without any tubes, wires, or vent. She is our little miracle!

She is doing normal things – like grocery shopping. Wahoo! Love it!

We decided it was time to let go of some equipment. We donated her stander, kid kart, tomato chair, and boxes and bags of medical equipment. Amazing! Way to go sweet girl! You have traveled so far. I am so proud of you!

Her therapists remembered her birthday which was so kind. Her teacher brought over a gift. Grandma Turpin sent money. Grannie Annie sent her sheets. Grandma Ball, Nathan, and Mandy dropped by for cake and present opening. So much love for our little girl.

Bella, you are an amazing little girl! We love you! May this be a wonderful year for you as you begin to explore and discover the world around you!

Other amazing events this week (besides pulmonary), Bella went to the dentist. No cavities! G-tube feed kids usually don’t get cavities, but they get terrible build up. He wants to wait a little more before putting her under and taking care of those teeth. Gives me time, too, to get some other things set up. Like taking care of her hernia (from one of her many chest drain tubes). One sedation, two procedures – effective use of sedation!

Wednesday, November 7, 2012

Today was our first post-decannulation visit. It was awesome! Our doctor went out and brought in two other doctors who remember her from the very beginning. They cheered! They admired her neck! I received hugs. It was good. I kick myself that I didn't think to get a picture!

But the reason that prompts today's entry is an experience in the waiting room. A young woman was brought in by the paramedics. She was laying on a stretcher. Her vent was behind her head. Her mother had her travel bag and suction machine. They came over by us and plugged in the vent. It was the same LTV we had. Bella watched the young woman very closely for a long time. Then she turned to me and touched her neck right over her stoma several times. "Yes, Bella, she has a vent like you did." Then she got this funny look on her face and cuddled in hard. I poured lots of love into my little girl. She was definitely processing all of that. She is delighted to be free from the vent. She tells me every day. "happy, happy" I wonder what she was feeling at seeing the vent again, at seeing another person like she was. I hadn't thought that she would have negative feelings to process. Hmm...

Sunday, November 4, 2012

Music therapy – as much as she loves Miss Angela, she was not going to put those little toys on her fingers (sensory), so sissy stepped in to help.

Playing with chalk outside; Laughing with her sister – love how she covers her mouth when she laughs!

She has learned to laugh, truly laugh. And it has won over our souls! Everyone loves to listen to her laugh!

Working, as ever, on those sensory issues. Her OT can get her to do things, like touch paint and get dirty, that no one else can. Yeah!

Dancing at sister’s party

Look at this!!!! She is so determined – despite her knees and her ankles – she tries again and again. And Saturday night she did it – not once, but three times! We all yelled and danced. She stood! My baby girl stood!

Pulling up Success!

I was talking to one of her nurses and she was telling me what a miracle Bella is. Three months ago, she said, I would never have believed that she would be here. It’s nothing short of a miracle, she said. It’s God shining through her. I always feel bad when I hear that because I think of all the little ones that don’t make it. My heart pains with Survivor Mommy Guilt. But I am, nevertheless, grateful. Who would have ever dreamed that she would be doing this well? Definitely not me. I am the Mama, (confession time) who has prayed in the past for her to die. I did. Why should she suffer so much? What was the point? Why should she lay there day in and day out struggling and fighting for a breath? And here she is. The Amazing Bella who defies me every day. Look at me, Mama! Not only am I going to live; I am going to thrive!

Well, maybe I’m too close to see you clearlyOr is it now my role to simply believe?You’re just one of those mysteriesThat may never be solved in timeBut you do — you do — you shine

And Sammy will do what Sammy will do when Sammy is ready to do itAnd Trevor will do what Trevor will do when Trevor is ready to do itAnd Lucy will do what Lucy will do when Lucy is ready to do itAnd they’ll do it in their own time